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Most drs rarely see 1-2 patients a year with, some with never seeing any. When did they begin and how did they initially manifest.. She ran a ton of different tests to find out things that might be causing it By the grace of God, Cryo was one of them. I cannot go to the grocery store very long at all without having my joints hurt and then getting dizzy and then almost passing out, which my doctor says I could stroke easily because of the sudden cold.

It wasn't until 6 months later that my symptoms came. The constant going in and out of the fridge is bad long term so I use a towel.

Ed Moderator: So Rochelle let's start the discussion on Cryo (if I can just call it Maybe first a definition would be good. Each Cryo patient had different areas of the body affected than others and different severities Ed Moderator: Incredible Rochelle: Not fun, it can be painful Ed Moderator: What is incidence or prevalence, Rochelle? So, anyways, besides cancer, there is also a connection with Hep C. I was dx with Graves Disease first, an autoimmune thyroid condition. Lost a ton of weight, weak and thought I was having heart issues. Ed Moderator: Are those all three connected in some way. Rochelle: I cannot pick up a cold glass of drinks without it being painful to touch. Rochelle, I actually think all three are the same disease with different symptoms Rochelle: What do you mean by being the same, Dr. I’ve never met anyone who had the number of autoimmune diseases you have Rochelle: raynauds, uctd, Sjogrens, Bell's Palsey attack, Scleroderma (Morphea type) and live do Reticularis Dr. And then I moved to rehab hospital working in the medical billing before being a mom. Eric: Rochelle, have you contacted the Vaculitis Foundation? Great lady Ed Moderator: We have people in our group with PAN who complain about sensitivity to different temps..and cold.

Rochelle: Ok, basically what Cryo means or does in our body is when our bodies are subjected to cold (Cryo meaning cold) and that temperature is usually below normal body temperature but it seems to be different for each of us our blood thickens and it causes damage to or vessels and inflammation. To make matters worse, our kidneys have to filter out a protein that is created during this process that thickens our blood and it clogs up our kidneys and does major damage. Ed Moderator: If I remember at the VF symposium in Long Beach there was just one Cryo patient Rochelle: They have many underlying causes such as cancer like Lymphoma or Multiple Myeloma, which we are finding a huge connection. Eric: I see a lot of autoimmune thyroid disease in postpartum women... Ed Moderator: Rochelle, describe how Cryo causes you such sensitivity to temps Rochelle: Well, unfortunately, I have several cold diseases so it can be difficult to tell which is which one. However, obviously Cryo is the most life threatening so I am most cautious. I have photosensitivity which doesn't help me much! movie theaters...restaurant..an office where you have no control over temps Rochelle: Yes, it is now second nature to me but it has taken several years to accustom myself to it. Plus I keep an epipen and those chemical warmers with me Dr. EVERYWHERE is air conditioned to the strato-freeze level! You are one of the "lucky" ones who show more than one. Eric: Yes, treatment is often pred or methotrexate... I can tell you Rochelle..all my years of doing this. And then I moved into the human area and worked for a dermatologist.

Ed Moderator: You mean the cold temp of the eggs is enough to cause a problem.. Now a warmer climate also brings problems Ed Moderator: How so?

I love ice cream but damage could happen on the inside so I limit it. Peter: l am still mashing it around in my head as to just how hard life would be with Cryo Ed Moderator: And you said because of this you had to relocate to a warmer climate? Not everyone can do this but I was fortunate to be able to do so.

Eric Hoy: Immunologist Online Resources: Cryoglobulinemia: Cryoglobulinemia Facebook Page: _____________________________________________________________________________ Ed Moderator: There she is.... Peter: Hello Rochelle Ed Moderator: Welcome to our chat Rochelle Rochelle: Hello, Dr. I think I read from a prior chat that you are an immunologist?

My name is Rochelle Ray, Director of Cryoglobulimia Vasculitis Organization Ed Moderator: and we have peter from Australia , Bernie from Washington State.

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